Veteran struggles with constant pain
Some push to have little-known debilitating syndrome given VA rating system code
Former Marine Kevin Shear, writhes in pain on Dec. 7 before he is taken to the hospital for intravenous medication. Shear, of Crystal Lake, suffers from complex regional pain syndrome. (Stacey Wescott, Chicago Tribune / December 7, 2010)
When Kevin Shear falls asleep, the pain barrels into his dreams, sometimes as an animal ravaging his right leg or shattered glass tearing at the limb.
The former Marine from Crystal Lake suffers from an unusual condition that attacks the central nervous system and leaves him in constant anguish, much like amputees who feel pain in their “phantom limb.”
The illness, complex regional pain syndrome, can cause lifelong medical nightmares for some adults and even children, usually after a mild trauma inflames the nerves, causing pain that never shuts off — even after the original injury heals.
Today, more veterans are complaining about the condition, which they believe derived from injuries suffered in the service — in Shear’s case, an ankle sprain during a training exercise. Because the malady isn’t formally recognized by the U.S. Department of Veterans Affairs, Shear and others say they find it difficult to get benefits from the government.
The veterans say they have lived in silence for too long and believe the military will see more of these cases as injured soldiers seek medical care. Although there is no way to know how many vets suffer from the pain syndrome, the number of appeals for disability compensation that cite the illness rose to nearly 600 in 2009, up from 330 in 2005, according to the Board of Veterans’ Appeals. The board lists about 500 cases related to the syndrome for 2010.
“It’s hard for people like us to mobilize,” said Shear, 34, who added that he has passed out from the burning pain and can no longer work or care for his 2-year-old son. “It’s hard to do anything. That’s why they call it the silent suffering.”
Shear has joined a campaign to raise public awareness and push for the VA to update its coded list of disabilities. An Air Force Reserve colonel suffering from the syndrome has led the charge in seeking compensation for hundreds of other military personnel returning from service. Many complain they have found little support from a federal agency already besieged with head injuries and post traumatic stresssyndrome.
The VA compensates veterans for injuries related to complex regional pain syndrome, said Thomas Pamperin, the agency’s deputy undersecretary for disability assistance, based in Washington.
But he doesn’t believe it is necessary to assign a code to every disability, saying “our ratings schedule is flexible enough to evaluate any recognized condition.”
Most patients refer to the condition by its former name — reflex sympathetic dystrophy. It usually begins with a searing or stabbing pain that is disproportionate to the original injury and persists longer than the expected healing time. The first signs may include a hypersensitivity to touch, swelling and skin discoloration, altered temperature and abnormal sweating.
The pain ebbs and flows daily, causing anxiety when patients believe they have improved only to have it return, sometimes much later, said Dr. Timothy Lubenow, professor of anesthesiology at Rush University Medical Center.
No one is sure how many people suffer from the illness, which can be cured if caught early, Lubenow said. The Reflex Sympathetic Dystrophy Syndrome Association based in Milford, Conn., estimates there are 50,000 new American patients annually, based on Norwegian studies.
Few doctors understand it, and many don’t know how to best treat it, Lubenow said.
“It was initially ascribed to people in the Civil War who had gunshot injuries,” Lubenow said. “It is not as infrequent as one would think. … It isn’t always as readily recognized as it should be because early on it may present with relatively mild symptoms.”
Shear’s first sign of trouble began one year after he joined the Marines, when he sprained his right ankle in 1998.
His leg swelled for three months, and the pain remained long after the sprain healed, he said.
In 2001, he was diagnosed with the syndrome and got a series of injections to block the sympathetic nerves, which run along the spinal column and provide sensation to the legs. He immediately felt better. A neurologist at the Naval Medical Center in San Diego told him he was cured, he said.
His wife, Amy, said Kevin was fit and healthy when she met him in 2005 and they married a year later. The two joined a gym, took up ballroom dancing and had a son, Lincoln. Kevin Shear started a business, teaching guitar to more than 20 students.
Then one day in September 2009, the pain returned with a vengeance.
Shear sought help at the North Chicago VA Medical Center but said he was treated so badly there that he contacted Rep. Don Manzullo, R-Ill., to complain.
North Chicago VA’s spokesman declined to comment on Shear’s case because of privacy concerns but stated: “Any eligible patient who comes to us with pain will receive medical care and will be treated regardless of the medical condition.”
Shear now travels for treatment to the Milwaukee VA hospital, where a spinal cord stimulator was implanted in his back.
His condition has improved, he said, but he cannot walk for more than 10 minutes or sit for longer than 45 minutes without severe pain. He takes a slew of medications, including painkillers and muscle relaxants, and grimaces at the touch of a blanket or brush of a hand.
His mother recently drove him to a hospital’s emergency room in Woodstock when pain overwhelmed him — a trip he has made a half-dozen times over the past year. There, doctors could do little but administer pain medication intravenously.
“It’s horrible to watch your son go downhill like this,” said his mother, Wendy Shear, who baby-sits the couple’s son at her home. “People don’t believe me. Friends don’t believe me. They say it will get better. It’s hard, especially for him. He’s very much alone.”
Shear can no longer embrace his wife, pick up his son or play his guitar. He finds solace in art, music and writing poetry.
Some people with the syndrome suffer from much less pain and can hold jobs.
But if left untreated for too long, the nerve damage can spread to other parts of the body, said Air Force reservist Col. Doug Strand, 51, of Hampton, Va. He said he developed the syndrome after injuring his left leg in 2008, and now copes with problems affecting his lungs.
In October, Strand testified in Washington before a committee that is revamping the veterans disability-rating system. If the pain syndrome were assigned its own code, some veterans could see their monthly disability pay increase by hundreds of dollars, he said.
“You cannot survive on $300 per month,” Strand said. “That is what happens with so many veterans. They say what do I do now? I can’t stand, I can’t walk. I can’t work. …”
After living daily with pain, many patients experience depression and undergo personality changes, experts said. What exacerbates the problem is that people who aren’t familiar with the syndrome don’t understand its debilitating effects.
Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, started a Web page devoted specifically to veterans after hearing complaints from returning soldiers.
“I always laugh when they say, ‘It’s in your head,'” Broatch said. “I say, ‘Damn right.'”
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